Sunday, June 28, 2020

Holidays, Quarantine, and the ER

It's a week into the summer, it's months into the pandemic, and it's time for me to write an update on the Spring. I am sure your past three months were crazy too, because I can't think of anyone worldwide who hasn't been affected by Covid-19. Who else feels like we're living in an alternate reality?

Two weeks after North Carolina's stay at home order, we moved house. Our timing is impeccable, no? Ha. It was stressful for sure, but we managed to relocate with just a rented truck and my sister's family's help. As the realities of quarantine settled in for us, we stretched out in a fairly empty new home. (Furnishing a place when half our belongings remain in East Asia and stores are closed presented a unique challenge. We are still without a couch or bed frame or dressers! It hasn't been that big of a deal. We can wait.) James kept busy with house projects (memorably falling through the ceiling while installing lighting), Owen burned off steam in the yard and cul-de-sac (he's mastered his balance bike), Addie spread out in her own room and enjoyed neighborhood strolls, and I planted a quarantine container garden.


In April we celebrated Easter, Owen's birthday, my birthday, and Addie's birthday all in rapid succession! It was...different. Being able to gather with family and friends to commemorate milestones is so important to our human experience. As special as I strove to make it, Adelyn's first birthday seemed especially muted. Addie wasn't going to get excited about a socially distanced car parade or be able to devour a smash cake, and the absence of those who had helped her fight for her life this first year was felt. Nevertheless, your messages of love sang out over the silence of isolation. Thank you. And even without the crowd of loved ones, there was so much to celebrate. Gratefulness for miracles, life, and hope abounded in our hearts.



The interruption of Adelyn's nursing care, the suspension of her therapies, and the deferment of her doctor's appointments were especially difficult over the past 17 weeks. Many parents can relate to feeling the pressure to be all things for their kids--teacher, sole playmate, barber, chef, etc. In addition, I am now serving as my daughter's physical, occupational, speech, and feeding therapists (via virtual instruction).

One happy event was that UNC's Feeding Clinic decided that Adelyn was an urgent case, and they made an exception for her to be seen and treated. Under their care and direction, Adelyn's comfort with her tube feeds and progression in eating by mouth has improved dramatically. By the end of April, she had transitioned from breastmilk to a "real food" blenderized formula that she now gets through her g-tube four times a day (as opposed to 6+ times a day that was her previous norm). She also started a medicine that has almost completely curbed her nausea. It's been a game changer. Without all the vomiting, her interest in purees has slowly grown. She is taking teeny oral meals three times a day now! She is still dependent on her tube feeds for nutrition and growth, but she's clearly moving in the right direction. Her quality of life has dramatically improved, and our whole family has felt a weight lifted as we cheer her on!

In May Adelyn got sick and developed a high fever. Because of Covid-19 restrictions and the constant concern of a shunt infection, she was sent straight to the ER. It was fascinating being ushered directly to an infectious disease isolation room, being treated by doctors and nurses in hazmat suits, and communicating through walkie-talkies. Adelyn tested negative for Covid-19, was diagnosed with another infection, and was fairly quickly released with antibiotics. How thankful we were that she could be treated at home, but we didn't quite make it through the pandemic without an emergency. It was less terrifying than I had originally imagined--perhaps because the initial rush of adrenaline carried us through the experience, ha. She continued to battle an extremely high fever through that weekend, and had to have some follow-up visits, but Adelyn has completely recovered.


Mother's Day, James' birthday, and Father's Day have all come and gone. James had hoped to travel back to East Asia to pack up our remaining belongings and close up shop. Alas, the pandemic has halted flights between the two countries (and he would've been subjected to long quarantines on both ends of a trip). We are accustomed to living in limbo and trust that there will be another opportunity before James' visa expires this autumn.


Now with the relaxing of Covid-19 restrictions in our area, Adelyn has had a packed couple of weeks playing catch-up with doctor appointments. It has been overwhelmingly good news. The eye specialist, neurologist, and cardiologist all say she looks fantastic! Her feeding team is excited for all her successes, big and small. Addie was tested by a pediatric psychologist guru on all her milestones and has significant delays in her motor, language, and cognitive development, but that was expected. Her numerous therapies continue virtually. She's growing, progressing, and charming us in all areas of her life. We are so proud of our little fighter!


There continue to be family, local, and world events that have felt heavy and sobering this spring and summer. We continue to be very cautious as the pandemic continues. Yet despite all odds, life for the Rosenbergs (especially our youngest family member) has improved. Thank you for your prayers, gifts, and help. Please keep lifting us and (and specifically Adelyn) up to the One who is the giver of all good things. May you too, be finding hope in Jesus, the only guy who has any control of what goes down in this crazy world in this unprecedented era.

Stay safe and healthy, all!